I prep Addison for red light therapy and head to the fridge. Inside are Addison’s growth hormones, meticulously labeled and color-coded by my wife (perhaps the most
organized thing in our entire household). I head back upstairs and spend time with her during the session. Every evening follows roughly the same routine.
What changes are the thoughts that run through my mind during those 10 minutes.
Why her? Why us? Why anybody? Why, regardless of what faith you do or don’t believe in, does Prader-Willi syndrome exist?
The short answer, at least the one I tell myself, is that there is no reason at all. Sometimes things simply happen. Just like so many things in life, you can prepare perfectly and still find yourself completely blindsided.
Then I think, What now? Right now, my daughter has a syndrome that has no cure. What if she wants to be a professional tennis player? An astronaut? A school teacher? Whatever she dreams of becoming, I want her possibilities to be as limitless as possible.
That is why I became involved in research. More than a year ago, I stopped asking “What if?” and started asking, “What’s next?” How can we make life better for people living with PWS? How can we create more opportunities, more understanding, and more hope?
For me, the answer is simple, get involved and support science. The more we learn, the better equipped we are to face these challenges together. I used to think research was just the title of a boring PBS special. Today, I see it differently.
Research is the most powerful tool we have. Every improvement in quality of life comes from people who refused to accept that “good enough” was enough.
Research is how we move from “What if?” to “What’s next?”
And for Addison, and everyone living with PWS, that question is worth pursuing every single day.
